Fibromyalgia Support Groups

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Both research studies and feedback from Fibromyalgia patients provide strong evidence for the effectiveness of Fibromyalgia support groups in improving overall life function and reducing symptoms.

Social support can best be described as a network of human relationships that are available to an individual when they are facing difficult life challenges. This network typically encompasses more than just intimate spousal or partner relationships, but broadly includes interactions with friends, neighbors, colleagues, and critically – others facing the same or similar challenges (Gerson & Gerson, 2012).

Research has demonstrated that social support tends to be lacking for individuals who experience chronic illnesses. Although the reasons for the decreased social support of chronically ill patients in general are not fully understood, they may be due in part to the fact that the needs of patients often exceed the capacity of what normal social relationships can offer.  Reduced social support from friends and family may reflect the difficulty that healthy individuals often have relating to those with chronic illness and the fact that challenges relative to relating often cause emotional discomfort. This can often lead even long term friends to seem “lost” when it comes to understanding and grasping the challenges someone facing a chronic illness must deal with daily.

Specific illness focused support groups have been demonstrated to be effective at helping individuals who suffer from a variety of chronic conditions, including both adult and pediatric cancers, heart disease, and chronic pain (Houtzager et al., 2001; Smeardon, 2001; Stewart et al., 2002; Subramanian et al., 1999), as well as Fibromyalgia (Friedberg et al., 2005). Individuals with irritable bowel syndrome, ulcerative colitis, and Crohn’s disease have also been shown to benefit from support group participation, which can help patients cope with these severely debilitating and often embarrassing chronic illnesses (Leshem, 2003; Gerson & Gerson, 2012).

Important Characteristics of Support Groups

Support groups are comprised of individuals who share a common concern and who unite to lend support to one another in order to improve coping skills related to their shared stresses and difficulties (Northern, 1989). Support groups, if conducted appropriately, have the potential to provide individuals with a number of benefits. First, they facilitate the exchange of information regarding a particular disease or condition between individuals who share that common illness. Next, support groups provide an outlet for the teaching and exchange of coping skills for relevant symptoms. Support groups also provide a non-judgmental and understanding environment in which individuals can talk to others about their common fears and feelings. In addition, support groups reinforce the belief that only another individual with the same condition or illness can truly understand how one feels. Support groups also provide patients with coping skills to overcome frightening symptoms. Finally, support groups allow others to enjoy the ability to help others help themselves (Scordo, 2001).

It is important to understand, however, that support groups can also have unintended negative consequences. Some studies have reported that as many as one-quarter to one-third of all participants eventually drop out of their support groups due to the presence of too much negative dialogue (Friedberg et al., 2005). The frequent discussion of symptoms and other negative factors associated with a particular disease may reinforce the sickness aspect of the disease, rather than spurring discussion related to effective coping strategies and alternative treatment options. Furthermore, discussion of chronic fatigue and pain in the group setting may unintentionally reinforce catastrophizing (describing pain as horrible or unbearable), as well as promote awareness of individual shortcomings with regard to pain management and symptom tolerance (Friedberg et al., 2005). Therefore, it is important for all members of a support group to be individually accountable to both themselves and others for the content of their discussion and the advice that is offered. It is important that participants not dwell for prolonged periods on negativity, but rather focus on how the exchange of feelings, ideas, and information can be beneficial to themselves and their fellow support group participants. Support group members should view one another as partners in getting better. The importance of empathy as it pertains to painful symptoms and emotional difficulties cannot be emphasized enough; however, it should be effectively used within the support group setting to catalyze productive dialogue that leads to symptom improvement and emotional support for all involved.

Fibromyalgia Support Groups

Studies have shown that fibromyalgia patients often experience significantly greater feelings of loneliness and hopelessness than patients with other chronic illnesses (Kool & Geenen, 2012; Kool et al., 2012). Fortunately, studies have repeatedly found that fibromyalgia patients who receive adequate social and family support tend to have an overall better quality of life than those who do not (Beal et al., 2009; Ubago et al., 2008; Schoofs et al., 2004), and many fibromyalgia patients participate in Fibromyalgia support groups as part of their comprehensive and multidisciplinary Fibromyalgia treatment approach.

Studies have also shown that social support interventions may be useful in improving both marital satisfaction and sexual and domestic role strains for the husbands of women with fibromyalgia, a group that frequently reports poorer physical and mental health than husbands of healthy women (Steiner et al., 2010). This could also result in indirect positive benefits on fibromyalgia patients themselves, as considerable evidence exists to support that healthy marital relationships result in improved health status for both husband and wife (Kiecolt-Glaser & Newton, 2001).

Fibromyalgia support groups should play a key role in a broad Fibromyalgia treatment approach for all individuals struggling to manage their Fibromyalgia. Research has clearly demonstrated that patients who are active in a positive Fibromyalgia support group develop significantly better coping skills and experience a greater reduction in symptoms than individuals trying to go it alone.

Care must be maintained to ensure that the overall tone within a support group remains positive and the focus centered on helping each other move forward with building coping skills and developing effective individual treatment efforts. Support group members should carefully and gently remind each other to try and focus on researching and developing positive treatment options rather than allow themselves to slip into fixating on symptom severity. Given the prevalence of depression among Fibromyalgia patients and the role it plays in fostering negative feedback loops, Fibromyalgia support group members should always be aware when others in their group are struggling and strive to provide as much understanding and support as possible.

Care, understanding and support are all key aspects of a successful Fibromyalgia support group, but accountability must also be a primary purpose of the group. Repeated studies across many medical conditions and social structures including weight loss, diabetes, asthma and others have shown that in situations where actions can result in positive gains, having social support to drive accountability has resulted in higher rates of follow through on required actions. Given that treating Fibromyalgia effectively typically requires multiple treatment initiatives and the ongoing testing of different treatment options, having strong social support that includes help in staying accountable for following through on treatment efforts can be critical.

Getting involved with a Fibromyalgia support group does not have to be difficult. There are numerous online resources for such support groups including the new FibroTrack online Fibromyalgia management system. The FibroTrack system actually matches Fibromyalgia patients together into support groups based on geographic location, age, familial status, symptoms, treatment focus and many other factors. FibroTrack provides Fibromyalgia support groups with tools to enable shared research, sharing of symptoms and treatment data, special support group focused social networking, training webinars for different treatment therapies and exercises, interviews with Fibromyalgia experts and researchers and many other capabilities.

Learn more about FibroTrack Here.

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References

1.        Kool MB, Geenen R. Loneliness in patients with rheumatic diseases: the significance of invalidation and lack of social support. J Psychol. 2012;146(1-2):229-241.

2.        Kool MB, Van Middendorp H, Lumley M, Mijlsma JW, Geenen R. Social support and invalidation by others contribute uniquely to the understanding of physical and mental health of patients with rheumatic diseases. J Health Psychol. 2012;Feb 23. Epub ahead of print.

3.        Steiner JL, Bigatti SM, Hernandez AM, Lydon-Lam JR, Johnston EL. Social support mediates the relations between role strains and marital satisfaction in husbands of patients with fibromyalgia syndrome. Fam Syst Health. 2010;28(3):209-223.

4.        Beal CC, Stuifbergen AK, Brown A. Predictors of a health promoting lifestyle in women with fibromyalgia syndrome. Psychol Health Med. 2009;14(3):343-353.

5.        Ubago L, Ruiz-Perez I, Perez MB, Labry-Lima AO, Hernandez-Torres E, Pazaola-Castano J. Analysis of the impact of fibromyalgia on quality of life: associated factors. Clin Rheumatol. 2008;27:613-619.

6.        Schoofs N, Bambini D, Ronning P, Biclak E, Woehl J. Death of a lifestyle: the effects of social support and health care support on the quality of life of persons with fibromyalgia and chronic fatigue syndrome. Orthop Nurs. 2004;23:364-374.

7.        Gerson MJ, Gerson CD. The importance of relationships in patients with irritable bowel syndrome: a review. Gastroenterol Res Pract. 2012;Article ID 157340; doi:10.1155/2012/157340.

8.        Keicolt-Glaser JK, Newton TL. Marriage and health: his and hers. Psychological Bulletin. 2001;127(4):472-503.

9.        Northen H (1989). Social work practice with groups in the health care. In: J.H. Schopler & N.J. Galinsky (Eds.). Groups in health care settings.  12(4):7-26.

10.     Scordo KAB. Factors associated with participation in a mitral valve prolapse support group. Heart Lung. 2001;30(2):128-137.

11.     Houtzager BA, Grootenhuis MA, Last BF. Support groups for siblings of pediatric oncology patients; impact on anxiety. Psycho-oncology. 2001;10:315-324.

12.     Smeardon K. Fighting spirit: a psychoeducational group for younger women with breast cancer. Int J Palliative Nurs. 2001;7(3):120-128.

13.     Stewart M, Davidson K, Meade D, Hirth A. Group support for couples coping with a cardiac condition. J Adv Nurs. 2002; 33(2):190-199.

14.     Subramanian V, Stewart MW, Smith JF. The development and impact of a chronic pain support group. J Pain Symptom Manage. 1999;17(5):376-383.

15.     Leshem RN. Inflammatory bowel disease support groups. Gastroenterol Nurs. 2003;26(6):246-250.

16.     Friedberg F, Leung DW, Quick J. Do support groups help people with chronic fatigue syndrome and fibromyalgia? A comparison of active and inactive members. J Rheumatol. 2005;32:2416-2420.

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